Feb 13rd 2024 - Sophia’s Story

told by mum Taz   Sophia was born on the 22 February 2016 I was absolutely delighted to hold her in my arms for the first time. Apart from slight jaundice and not feeding much and being very sleepy, she was perfect. The first week at home was intense, Sophia would cry all the time, […]

Feb 12nd 2024 - Kailer’s Story

told by mum   We found out about Kailer’s heart condition when I was 20 weeks pregnant with him, we were sent to Glasgow fetal medicine unit where we went under more intensive scans on his heart where he was diagnosed with transposition of the great arteries we were told to he would have to […]

Feb 11st 2024 - Bethany’s Story

told by herself   My entire life I prepared for a dance career and just entered a prestigious pre-professional program when I was diagnosed with hypertrophic cardiomyopathy at 17. At first, my heart thickness wasn’t concerning; over time, it’s significantly worsened. I’m on my second implanted defibrillator. I no longer dance. It’s tough seeing others […]

Feb 10th 2024 - Paul’s Story

told by Paul   I am not a role model! I am: A husband An employee A disabled network leader A good cook and baker Chaotic and untidy Loved by some, despaired of by others, disliked by some A scientist with an Arts degree An Entomologist with published poetry A patient with ultramarathons under my […]

Feb 09th 2024 - Cara’s story

told by mum Vicky Cara was born with Pulmonary Atresia in Sept 2018 and at her 20 week scan we were told there was something wrong with her heart because the pulmonary valve hadn’t formed properly. We were told Cara was eligible for fetal balloon valvuloplasty at 28 weeks pregnant. This involved a needle being […]

Feb 08th 2024 - Adam’s Story

told by Adam   I was born in 1986 at Scunthorpe General Hospital and was diagnosed with Aortic Stenosis at birth. Throughout childhood, I was under the care of Dr Parsons and Dr Evans for all my cardiac appointments. At aged 10, I had a balloon procedure and continued with yearly outpatient appointments at Scunthorpe […]

Feb 07th 2024 - Imogen’s Story

told by Grandmother   We found out at the 20 weeks scan that Imogen had hypoplastic left heart syndrome which was devastating. Imogen was born on the 3rd August 2016 and was taken to the Freeman hospital after a couple of hours. She had her first open heart when she was 2 days old which […]

Feb 06th 2024 - Sam’s Story

told by mum   Samuel was born at full term after an uneventful pregnancy. We had had a quick discharge from hospital, so our GP visited us at home the following day and a full newborn examination did not reveal anything unusual. Samuel was very quiet, rarely cried and slept beautifully. My only complaint with […]

Feb 04th 2024 - Kodi’s Story

told by mum Lynsay   At 12 weeks of pregnancy I was told that the baby was very poorly and the fluid around the baby was too much and was pressing down on the baby’s chest and head, the hospital was advising me to terminate the pregnancy as by the time I got to the […]

Feb 03rd 2024 - Mary’s Story

told by mum Elizabeth   Before having a child with a hole in the heart, I never imagined the knock-on effects. Who would have thought that it would result in feeding her through a naso-gastric tube or that it might cause extreme reflux and, as a result, it took two people over an hour to […]

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